Nonepileptic events, or seizures that are not caused by abnormal electrical activity in the brain, are frequently misunderstood. Psychogenic nonepileptic events or seizures (PNES) is the term used most often to describe events that are not epilepsy and are thought to have a psychological basis. While tests such as video EEG telemetry can help diagnose these events, treatment is often not available or offered in a systematic way to people. This study looked at common approaches to telling a person about the diagnosis and to treating PNES to see which may work best.
Description of study
For the study, 75 participants from one epilepsy center were randomly put into one of the following 3 groups and 37 of them completed the study. They first had video EEG telemetry to find out if they had PNES.
- Standard care – a physician discussed the diagnosis in their own way and encouraged people to get mental health care in the community.
- The diagnosis of PNES was discussed in a scripted manner (given the same way to everyone). Each person saw a psychiatrist on the inpatient unit and was given written information about PNES.
- The diagnosis was given in a scripted manner, a psychiatry consult was obtained, written information about PNES was given, AND people received phone calls after discharge.
A summary of study findings
Two months after discharge…
- People who were told by their doctor about PNES and told to seek care in the community had no change in mood or quality of life.
- People who were given the diagnosis in a scripted manner and who received a psychiatry consult and written information had PNES less often after discharge. Self-reported quality of life improved also.
- People who received phone call follow-ups in addition to the scripted diagnosis, psychiatry consult, and written information did the best. They had less frequent PNES, improved self-reported quality of life, and improved mood.
What does this mean?
- How people are told about the diagnosis of PNES is critically important and can affect whether a person seeks care afterwards.
- In this study, people who were given the diagnosis of PNES in a specific way with a “script” and who also saw a psychiatrist at the time of diagnosis had less events and better quality of life than people who did not have this approach. People who received these approaches and support from phone call follow-ups were the only ones who showed self-reported changes in mood.
- Since PNES are caused by or associated with psychological factors, simple strategies that can help mood are needed.
- Mental health resources were not readily available for everyone who participated in this study. Fewer people who received the diagnosis only from their attending physician saw a mental health provider by 2 months following their discharge. While long-term follow-up was not available in this study, the results are concerning because people may not be getting the care they need to treat PNES.
- This information can help health care professionals in epilepsy monitoring units look at how they talk with people about the diagnosis and treatment of PNES. People with nonepileptic spells can use this information to ask their health care team more about PNES and what type of care may help them.
Article published in Epilepsy & Behavior, January 2016
